1891 Disease Course and Self-Reported Daily Life Experiences of Young Adults with Juvenile Idiopathic Arthritis through Adolescence

Abstract

Background and Aims Functional disability and bodily pain seem to be the most important determinants of physical and psychosocial well-being in young people with juvenile idiopathic arthritis (JIA) into adulthood. Disease course and self-reported daily life experiences through adolescence, and health professionals' guidance and counselling in the transition process to adult life are explored. Method Telephone interviews based on a questionnaire including open-ended and closed questions among 51 informants as part of a second follow-up of a Norwegian cohort of patients with JIA 18.4 years after symptom onset. Descriptive statistics were used to analyse quantitative data. Data from the open-ended questions were categorised and quantified manually. Results Main findings are the high frequency of symptoms related to JIA the previous year (70.6%) and disease residua (78.4%). A considerable proportion experienced limitations in education planning and job accessibility, yet 46 informants (90.2%) felt satisfactory in their study and/or job situation. More than 55% of the informants answered that they to some/great extent were informed about illness related issues. However, more than 70% answered 'no' when asked whether they had received counselling with regard to psychosocially related issues, and 70.6% stated that they had not been prepared for transfer to adult ward. Conclusion JIA-related plagues and worries seem to impact the entire period of adolescence into adult life for a considerable proportion of the informants. Guidance and counselling should be formalised and should focus on both illness- and psychosocially related implications of the disease in young people with JIA.